1/21/09 - Praying for Good News!!!





I must say that I have never been so happy in my life to hear a world renown doctor made a small mistake. After the bronchoscopy procedure, we were told that Kayleigh was too small for a trach and she certainly could not be placed on an ET vent tube for a long time. One, the tube would cause scarring and more issues. Two, when she grows up, she is going to pull it out all the time. And three, she can never go home on it as we are not trained to put it back in and there will be no x-ray at our house to make sure it is in the right place.

Anyhow, this wrongful mistake was because the doctor thought Kayleigh was on high pressure settings, which in fact she is on very low settings. This means she could be on a normal trach as there will not be much pressure to open up those bronchial tubes. The trach could be placed in and adjusted as Kayleigh grows older and she could grow out of this bronchiamalacia that she is having in both the right and left bronchial tubes.

After our doctor took a day to speak with a well known doctor out of Cincinnati (Dr. Cotton), which is someone many of you suggested, he came to the conclusion that Kayleigh's problem could be outside the bronchial area. The next step was to do an MRA, which is very similar to an MRI, but it will look more in depth at the blood vessels that surround the bronchial tubes. This is to see if those blood vessels are swelling and pressing against the bronchial tubes, closing them when there is no pressure to keep them open.

A quick call back was made from Cincinnati deciding rather than doing the MRA, but to put a dye through the veins and look at the blood vessels with a CT-scan. This is a little less invasive because Kayleigh doesn't have to be heavily sedated like she would for the MRA.

--- intermission ---

We just got a call back from the nurse and Kayleigh is done with the CT-Scan and had no issues at all. The procedure took less than an hour, but a few hours to prep. She has to be NPO (not fed) for a couple hours before they did the scan. She is currently back in her section and satting wonderfully as if nothing ever happened. I am much happier to see that Kayleigh is tolerating these procedures much better than in the past. Her oxygen is sitting around 35% and she is awake and not crabby at all.

We are supposed to hear something, but probably not tonight. I will be sure to Twitter it (Tweet) tomorrow as soon as I hear something. I am on pins and needles for sure (I know you all are too), praying they found something minor that can be easily fixed without having to put in a trach. Please everyone say a prayer before you go to bed for our little girl and pray this hurdle will soon be jumped and we can keep moving forward to our goal of coming home and never look back.

If you have not grabbed our button from the right toolbar, please do. Add it to your blog, websites, Facebook and whatever else you can add it to. Even though Kayleigh is not on her death bed like she was a couple weeks ago, we can never stop praying each day that she makes it through each battle. The more prayers the better, so the more people who see Kayleigh's button will be intrigued to know this precious little girl who has touched the hearts of so many. Copy/paste the (html) in the box below the photo and add it your site and share it with the world so we can help bring people closer to God, to their family, and to give them hope in their own journey.





God Bless,

The Freemans :)

48 comments:

Kristie said...

Praying this will be a little bump in the road. I hope you do get to take Kayleigh home soon. She looks so big now. SO glad to hear she is tolerating these procedures now, that right there is evidance God is working on her still.

I will be praying for Kayleigh.

Kristie in Alabama

Anonymous said...

I am so happy to see a post. I could not sleep and so I just got out of bed to check one more time for an update...and here we go! Thank you for the pictures and the somewhat good news. I will go to bed now, and say a prayer... or two! Yeah Kayleigh... way to go girl... tolerating these procedures like a CHAMP! Woo-hoo! God bless!

E said...

Oh, awesome!!! I praise God with you and for you! That's an awesome post and she looks SOOOO fabulous! Keep up the good work Baby Girl!!!

Cathy said...

Oh my, Kayleigh is just full of surprises! I keep checking and praying (and checking and praying, and checking and praying,LOL), but this sounds like good news. I love the new pictures...she is getting so big.

If I could, I'd like to ask for some prayers for my family too. My mom has been very ill due to complications from vein surgery, and now my dad has had a stroke. They are both feeling a bit abandoned by God right now (even though deep down, they Know that is NOT true). Kayleigh has shown me what strength and prayer can do, and she is a lifeline for any of us struggling right now. Thanks for your faithfullness in sharing your jouney!

In Christ, Cathy

JaMean said...

KAYLEIGH! We are so proud of you baby! I could never go through a fraction of what you have. You have my deepest respect and admiration.

Aimee, Adam and kids, we love you so much and we pray for you every time we think of you! Thanks for the beautiful pictures.

She is getting so big and she is beautiful as ever. :)

Hug your nurses. :) They are what kept me sane during my son's NICU stay.

LOTS & LOTS of prayers and hugs to ALL of you!

Jaci said...

Thanks for the update. Sounds like good news. I will continue to pray

Grace said...

Thank God the news is better. Yes, prayers are still just as important as they were a few weeks ago. Bless you all!

Amber said...

I will pray tonight before I go to bed to continue to provide the doctors with wisdom to continue to treat Kayleigh to get her home soon. God is in control and he will continue to open doors for this wonderful little angel. Keep the faith and always praying for sweet Kayleigh and her family.

Love,
Amber

Jennifer in NM said...

Whew, good news. Thank you God. I am hoping that the docs can fix whatever they may have found and this beautiful angel can come off the vent and go home. I was just telling by best friend that she is in practically perfect condition to go home, minus the vent.

Which let me ask you a question. My best friend works with children who have respiratory problems and was wondering if any of this could be due to the fact that Kayleigh has been laying down for almost 7 months and has not had the opportunity to move around much, like a baby at home would be able to do. So she was wondering if the lack of sitting up and the lack of exercise could have any impact on her bronchial tubes. She was saying that maybe the pressure of constantly laying down is causing some of the problems.

I on the other hand was wondering if her being so close to death as she was and being on the vent for so long could have caused her not to exercise those tubes the way she was before being placed on the vent for the last time and just maybe they need to be exercised. What about a CPAP? I read somewhere online during my search for possible answers that it pushes pressure into the lungs? Of course I am probably off base by a long shot.

What a big girl she is for going through these tests like nobody's business.

Praying, praying, praying.

Jenn

Anonymous said...

Someone posted a good question about the CPAP! It is also used to decrese pressures in the lungs over time with people that have pulmonary hypertension, It works too because I have to use it. I think for it to work in Kayleigh case it would have to be on higher settings. I want to thank Jennifer on her question I was wondering about that too! We have be praying for everyone that you have asked us to pray for and are still praying for Kayleigh and you.

God Bless and goodnight

NeeNee said...

Hello my name is Mickey and I'm from DewyArizona and wanted to let u know how inspirational ur story of kayliegh is to me. I had my baby Kylie on June 23rd she was 4 weeks early and has a small hole in her heart which is so small maybe closed by now. U have a beautiful baby girl Kayliegh Anne shes definatly a fighter I have been following ur blog and checking for updates. Thanks You so much for sharing her story I will continue to pray for ya'll and Kayliegh is trully a blessing from GOD.I will continue to check for updates and pray for ur whole family Thanks again she really touches my heart. Grow babt kaylieh Grow. Thanks Mickey and Family

mommyandthethreeboys said...

God works in mysterious ways!!
Kayleigh never ceases to amaze me!
Manys baby squeezes to Kayleigh.
Love Amber (Las Vegas)

mommyandthethreeboys said...

ooops! I meant give Kayleigh many squeezes for all of us.

Anonymous said...

That is great news! I am so anxious to hear what the results are!
How is Kayleigh doing with her weight??
With Love from Southern NH

Hope said...

If you get a free moment, will you check out 2 blogs of 2 babies with broncomalacia? Both were preemies and both have trachs, home vents, and both are doing great at home. Actually they are now starting the vent-free tests to begin weaning off their vents this Spring/Summer. The trach is temporary for Kayleigh. Dr Cotton is great, isn't he?

Mikan's story: http://babyinthebend.blogspot.com/

And Faith's story:
http://faithedona.blogspot.com/

I hope these families and amazing babies give you hope. ((Hugs))

Amanda-The Family News! said...

Prayers for good news!!!!
I am with you on Twitter and Facebook now! I am passing along prayer requests for little miss Kayleigh!!!
Amanda- Spartanburg, SC

lmt1073 said...

I'm so happy to hear your sweet angel is doing better. I will continue to pray for her and for your family. God Bless.

Val said...

Those pictures are so precious! I especially like Aimee's smile on her face as she talks to Kayleigh. Always praying for your family.

Debbie said...

Great saying..."God doesn't give us what we can handle; God helps us handle what we are given."
Freeman family just keep pressing on...you are doing a wonderful job.

“Be still, and know that He is God” (Psalm 46:10).

Debbie
Columbia SC

Dalila from NJ said...

Praying for Kayleigh..

Erin said...

Look at your little angel sitting up like a big girl!! Gosh she is getting so big and strong. I wishing for good news as much as all of you. I'm glued to Kayleigh via this website. Keep the chins up...and plenty of xoxo's to Kayleigh.
The Polleys

Katie said...

I am praying praying praying all results come back with good news. I am adding your precious little miracle to my prayers and checking back for updates. I pray for peace for all three of you. :)

Adam and Sherry said...

She is so beautiful!!! She looks so good. I hope that good news comes today!! You are definatley in our prayers. She is so strong I just know that everything will work out the way it should be. I am so glad she has made it through all the procedures without episodes? How is her weight comming? And are her pressures any better? I hope so. You guys are so awesome I am glad to have found you on this journey. You are such a strenght to everyone. Thanks for being so amazing!!

bri said...

I am so amazed to be hearing such "wonderful" news about Kayleigh! It is unbelievable that not that long ago they were preparing you for the worst that was happening slowly. And here she is with a hope of being able to come home..."healthy"!

PRAISE YOU JESUS!

I printed a couple pictures of her to put on my fridge so when I see her I pray for you all!

Blessings!

Penny said...

Praying so hard here......... I did hear one thing in your post that made me jump a bit. Dr. Cotton from Cincinnati. I live just a short drive from Cincinnati. It just brought you "closer" in my mind. Your little champ has inspired me for sure. She is SO beautiful! I may have to sign up for Twitter just so I can stop refreshing during school!
Your little girl is champ and my prayers are for her o be running barefoot in the daisys soon!

mrsrubly said...

kayleigh i am praying that they find some immediate answers sweet girl. hang in there bonny in TX

Lindsey said...

Praying very hard and I know she will overcome anything thrown her way.

Anonymous said...

Dang I was really hoping they would find the answer! This is stressing me out so can ONLY imagine how the two of you are feeling.

Hang in there Kayleigh they will get you figured out yet! I do have to say that you are going to keep your mommy and daddy on there toes, you are suppose to cause them this much stress when your 17 not 7 months! : 0)

Praying for you peanut- your pictures look great, love the one of you sitting up.

Laurie in SD

Mel said...

Sorry I have been away for awhile, but never stop thinking and praying for sweet little Miss Kayleigh.
Hoping everything turns out all right and I am just so sorry that you all have to endure so many ups and downs. Very stressful I am sure.
Still praying in OK, M

giraffegirl524 said...

i'm praying for you all!! kayleigh is so sweet and beautiful!

i would LOVE to add your button to my blog, and i have tried but when i do, it says it doesn't allow html. =[ i don't know why.. is there something i'm doing wrong??

SMITH KABOBS said...

First off i would like to start by saying i continue to pray for kayleigh and for you as her family. I know everything will be great, god is good and he will heal her. and second thing HAPPY
7th month birthday kayleigh i am sooo tickled to look at your blog everyday and see your progress.

Kelly D said...

Can you still do the MRA? You stated it's more invasive than the dye test, but would it possibly give answers?

Did you consider the Informational Balancing information I sent you? It's free and might be worth a try. I know it sounds hokey!

Keeping you in my thoughts.
Kelly @tinytoes

mommaof4wife2r said...

that little precious pea just makes my heart flutter...and this time last year i was in NICU with my sofie, but she was huge at 3 lbs compared to kayleigh! that little princess is in and among my prayers all day...and i pray for you too as the NICU and all that is involved can take it out of you..i know. give that peanut a kiss.

Maria Fernanda said...

KAYLEIGHS EVERY DAY IS BEAUTIFUL,IT IS VERY GOOD TO KNOW THAT OUR PRAYERS HAVE BEEN HEART BECAUSE JUST God has the power of healing And I sincerely hope that SOON BE WITH YOU, MARIA FENANDA SOON IS GOING OUT TO THE HOSPITAL WE ARE VERY VERY HAPPY AND I KNOW THAT KAYLEIGHS IS GOING BE WITH MOM AND DADY TO, LIKE MARIA FERNANDA

MARIA FERNANDA FAMILY

Anonymous said...

I just love watching the map that shows where everyone is from. Take a look at it. When I first started praying for Kayleigh, most of the US was covered. Now, all of the US and Europe is covered. Australia, New Zealand, Africa, Asia are all joining in. What a miraculous thing God is doing with this sweet little girl... changing the world one heart and one prayer at a time.

Danielle said...

Still praying everyday that Kayleigh can come home soon. I just contacted Womans Day Magazine in hope that they will share Kayleighs story. I led them to your site, so more prayers to come, With love

Anonymous said...

We stand in prayer everyday for you.

Ande said...

luv the pictures!!!!! lolz she says "get this thing OUT!!!!!!!! NOW!!!!!!!!!!!"

Ande Malinowski age 13
www.colesfoundation.com
C.O.L.E. Prayer Team

Anonymous said...

The "Flair" application on facebook has a piece of flair/button for Kayleigh. Just search "Kayleigh"! I added mine today to spread the word...

Ellie said...

I too love the new pictures!!! May god be with your family! I love reading your updates!

Mighty M said...

Love your redesigned site! I KNEW it!!! :-)

*Kel* said...

I have never posted on here, but I recently found Kayleigh's story. I just wanted you to know that that little angel has really inspired me, she is a miracle. We don't get to see too many of those, and she absolutely is. Thank you for sharing your continuing story with us, I am sure I will keep checking often. Those recent pictures look amazing, she looks so fantastic. I try not to over use this phrase, but really God Bless her, and you guys for being so strong.

Thank You

cheeky chums said...

your little darling has already come through many hurdles each one a slow but a journey and one step closer to coming home. god bless her and my prayers go out to all the family from sheila at the premature baby store plus more at www.cheekychumsonline.co.uk

Jennifer said...

I LOVE the new blog. It's beautiful and perfect for a little princess. Kayleigh is getting so big!!! How she started to react to you guys yet?

Kelly said...

I just stumbled upon your blog today and I am in awe of your baby girls strenth and determination. I will be praying for your whole family. I also happen to work for Cincinnati Childrens (CCHMC) and I know that Cotton is AMAZING, so it was comforting to hear she is being taken care of so well by the truly the best!

Queenie Jeannie said...

I will be praying for your precious daughter!!

Janis said...

Thank you so much for letting us read about your lives during such a tender time. Your blog shows such strength on your parts as parents. You are incredible.

Your blog also helps remind us with strong, healthy kids to be grateful for every moment. Even when the kids are being a bit naughty. :)

Thanks again for giving us a glimpse of your life.

The Red One said...

lil K is showing herself more and more. So happy everything is good to go. I love the pic of you and her. Your face and hers are priceless! Keep on being you and doing you!